Reactive hypoglycemia probable causes diagnosis

[JayPatel]

Hi All,

I am 26, live in Germany and I am glad to be in such an informative forum which is perhaps more helpful than doctors themselves, particularly in this rare RH case. Below is my journey until I was diagnosed by RH:

MAR,20 - I had heavy acid reflux and indigestion problems: Did Gastroscopy and Colonoscopy: Came out H-Pylori positive
APR,20 - Given 10 day therapy (Pylera oral dose)
- During and after taking this therapy, I was in terrible situation due to the side effects of the medication. I was barely able to move, Back pain, Pain in groin area, Dark colored urine in morning, Muscle twitching and tingling, Mood swings.. etc
- I ignored these symptoms because I already knew that this medication has terrible side effects but I had to complete the dose to get free from h-pylori
- Sooner after completing this therapy, I started getting RH episodes (Sugar crash some time after eating). However, I could not recognize it at first place. I ignored it thinking it as side effects of medicine.
APR,20 - I did detailed blood tests that tested sugar, cholesterol, organs, TSH, and many more things. Every thing came out normal.
APR,20 - Lactose tolrance blood test: Negative
- Still this RH episodes were not going away.
JUL,20 - I did Gastroscopy again to confirm if everything is alright. No findings. H-pylori gone.
JUL,20 - Lactose tolrance H2 breath test: Positive
AUG,20 - This continued for few months and one day RH symptoms went to terrible stage where I also had muscle twitches on face, lips, Nausea, etc. Still I was not aware of RH. Forget RH, I was not even aware that its sugar crash to take some quick sugary things.
AUG,20 - EKG and sonography normal.
- Unfortunately, its difficult to convince doctors when they are also not very much aware of it. They started thinking that its psychomatic and everything is in my mind. I myself some how went to different doctor and took referral of diabetologist. Even at diabetologist, I had to convince them to make extended GTT test because they are like robot! If you are refered to their place, they will just do diabetes test i.e. measuring glucose after 2 hrs and determine if you have diabetes. I some how convinced them to do OGTT test for 3-4 hrs.
SEP,20 - Finally, I was relaxed that now atleast I know what is happening in my body. Below were my sugar levels in OGTT test of 75 solution:
- HBA1C: 5.4%
- Fasting: 102 mg/dl
- 1 Hr: 116 mg/dl
- 2 Hr: 88 mg/dl
- 3 Hr: 43 mg/dl

- They diagnosed RH and gave me referral for Insulinoma to rule out possibility of benign tumor on Pancreas
- Other than normal RH symptoms, I have other noticeable symptoms like foamy urine at middle of the night (regularly) , hand (Biceps) muscles squeezing (sometimes) and weight loss of around 8 Kgs throughout this journey
OCT,20 - Abdominal MRI done. No remarkable findings.
- Waiting for Insulinoma related consultation.

Please let me know if someone here know about Insulinoma as a cause of RH and if it is possible to confirm it. Because as I told earlier, out of all the tests I have undergone, 80% were insisted by me rather than the doctor. So may be I still have to drive it further.

Thanks!

PS: I have mentioned details of all the tests I undergone so that it will help to find relation between gastric problems and RH.

 

[EllieM]

My (very limited) understanding is that RH and insulinoma are different conditions, RH only happens after food but insulinoma will give you hypos even if you fast. To diagnose RH you have to rule out insulinoma first.

Anyway, if you have traditional RH then reducing the carbohydrate in your diet will hopefully solve your issues.

But you'll probably get better replies when the regular RHers are awake to post.

Good luck and welcome to the forums.

 

[MarkMunday]

Insulinoma doesn't cause RH. Bit it could be RH and insulinoma.

 

[Lamont D]

Hi @JayPatel and welcome to our forum.

The cause, though it hasn't been verified, in my case was heliocobacter pylori, I am convinced. I had the symptoms before, though I was unaware at the time and similar to you I had to battle with my doctors to get the diagnostic tests to get a true picture of how my body reacts to food.
Insulinoma is a different pancreatic condition, hypoglycaemia caused by insulinoma is because of nodules on the organ itself, it is not like reactive hypoglycaemia caused by foods.
I had to go through further tests to eliminate other conditions, one was a fasting test, 72 hours, to see if I went hypo without food, I didn't, so that confirmed that it was RH and not any other pancreatic condition.
I also had allergy tests and intolerance tests, funny, you should mention lactose intolerance, I have had this since childhood, I was very young when diagnosed. I have a grain intolerance, particularly oats and wheat, I also have an aversion to vegetable oils, I can only use saturated fats, particularly meat fats.

What is your dietary intake? Do you know which foods you have trouble with?
What dietary advice have you had?

Well done on the weight loss, hopefully it has had a good effect on your health.

I know what you are going through, it's a battle, before diagnosis it was hell!
I was in constant hypos.
The strange thing about RH, is you do a fasting Hba1c test, a fasting reading on a glucometer, they are normal. And because the symptoms are similar to T2, and other pancreatic conditions, they never give you a test to see what your insulin levels are.

This would be a start to find out what is causing the hypos.

Keep asking, it is knowledge that will help you through this, there is no cure, only dietary advice. I am willing to help you with it all, but do have a read of the threads on our sub forum.

Keep safe

 

[JayPatel]

Hi @JayPatel and welcome to our forum.

The cause, though it hasn't been verified, in my case was heliocobacter pylori, I am convinced. I had the symptoms before, though I was unaware at the time and similar to you I had to battle with my doctors to get the diagnostic tests to get a true picture of how my body reacts to food.
Insulinoma is a different pancreatic condition, hypoglycaemia caused by insulinoma is because of nodules on the organ itself, it is not like reactive hypoglycaemia caused by foods.
I had to go through further tests to eliminate other conditions, one was a fasting test, 72 hours, to see if I went hypo without food, I didn't, so that confirmed that it was RH and not any other pancreatic condition.
I also had allergy tests and intolerance tests, funny, you should mention lactose intolerance, I have had this since childhood, I was very young when diagnosed. I have a grain intolerance, particularly oats and wheat, I also have an aversion to vegetable oils, I can only use saturated fats, particularly meat fats.

What is your dietary intake? Do you know which foods you have trouble with?
What dietary advice have you had?

Well done on the weight loss, hopefully it has had a good effect on your health.

I know what you are going through, it's a battle, before diagnosis it was hell!
I was in constant hypos.
The strange thing about RH, is you do a fasting Hba1c test, a fasting reading on a glucometer, they are normal. And because the symptoms are similar to T2, and other pancreatic conditions, they never give you a test to see what your insulin levels are.

This would be a start to find out what is causing the hypos.

Keep asking, it is knowledge that will help you through this, there is no cure, only dietary advice. I am willing to help you with it all, but do have a read of the threads on our sub forum.

Keep safe

Hi @Lamont D ,

Thanks for your detailed response.

Eventually, as I read other threads, I found that people were having RH for very long time until they came to know about that. But in my case, I am bit sure that it has happened due to gastric problems and associated medications. If not Insulinoma, I strongly suspect some metabolic disorder that must have got triggered which is causing this.

I am vegetarian, and have gave up alcohol since 8-9 months (Occasionally I use to have 1 beer but its like once in 2 months or even less), Non smoker. I do moderate exercise (Minimum 6 Kms Walk or 10 Kms Cycling in a day).

About dietary advise, I am actually told to follow diabetic diet with little ease. To take more fats and protein as I lost 8 kgs in short span which I assume is unintentional, but I dont know if sudden break on alcohol and increased cycling can do that. (I was 69 Kgs. Height: 5'10")

For lactose intolerance, I tried soya and almond milk, but its not suiting me so went for Lactose free milk. However, I am advised to stop that as sugar in lactose free milk will be further divided in parts during process which will result in high glycemic index (Not good for RH). Other than milk, I use all dairy products with lactose free variant.

Befor Diagnosis:
Breakfast: Lactose free Milk 200ml, oats/corn flakes, Biscuits, Honey, nuts
Lunch: Cooked green Veggies, Whole wheat breads with butter / White rice, Yogurt, Cheese
Dinner: Cooked green Veggies, Whole wheat breads with butter/ White rice
- Somewhere between this, I was having fruits regularly (Banana/ Grapes/ Oranges)

After Diagnose RH:
Breakfast: Tea without sugar with normal Milk, Whole wheat bread, Eggs/Omelet
Lunch: Cooked green Veggies, Whole wheat breads with extra butter / White rice, Yogurt, Cheese
Dinner: Cooked green Veggies, Whole wheat breads with extra butter/ White rice, Cheese
- Fruits I am just taking some berries

Honestly, I am still struggling to find correct food to meet my dietary needs. Please advise if you feel any changes could help to rebuild my body and minimize RH symptoms. Basically I have to choose fats, proteins keeping Vegetarian diet and lactose free option.

I have noticeable symptoms when I have tea with sugar, Ice cream, Some drink with added sugar etc. After normal meals, I do fell little dizzy but its not that severe to get noticed.

Thanks and stay safe!

 

[Lamont D]

Guten tag,
Hope you feel better,
The reason why most of those who have had to go through a long time to get to actual diagnosis, is because doctors in our local surgeries are not trained to recognise RH and similar conditions, if they encounter such a case, they are referred to a specialist endocrinologist. However, depending on which specialist you get, you could still be misdiagnosed like I was for over a decade. Fortunately for me, I was referred to a clever endocrinologist who speciality is rare conditions. Plus I had a couple of hypos in front of him. He ordered all my tests and after a couple of months, I was amazed when he told me I wasn't diabetic and I had ' Late Reactive Hypoglycaemia' ! To say I was stunned, I just couldn't believe that I had a rare condition. He literally saved my life, I didn't have a clue, nor did my doctors!

You are right to include more protein and fats, but I would agree that increased cycling and the sudden drop in carbs and sugars, will drop your weight rapidly initially, but it should plateau off soon, one of the things I found was that I needed to stick to a dietary balance, that would improve my health and stop the hypos.
I am not vegan, but I do eat a lot of salad, I generally get my protein from fresh meat, roasted. And a lot of eggs! (No carbs!) So eggs in the morning is great. However, I have noticed a couple things that you may not be aware of, my exercise, due to my age and what happens during something like running or cycling, I get extra glucose from my liver, which triggers the reaction. I walk a fair bit for my exercise, fifteen minutes after every meal, for fifteen minutes, this is really good for digestion and your blood glucose levels. You have a lot of bread, grains, rice and probably starchy vegetables, these I avoid completely, if you are like me, and you are carb intolerant, any above a very small amount will cause the trigger to react.
I have a very weak initial insulin response, which when I have carbs, sugar or starchy vegetables, spikes my blood glucose levels high from normal range. Because of the high spike, the brain tells the pancreas to do something and produces insulin to cope with the glucose. My pancreas doesn't stop, and what is called an overshoot happens, the amount of insulin is too much and drives my blood glucose levels down into hypoglycaemia. The only way it can be stopped is eat or drink enough to get your blood glucose levels up. Hence, the eat every three hours advice. I have found that this is too much, and I use intermittent fasting with a Keto diet works for me.
Obviously because of the symptoms you get, having sugar, ice cream or sugary drinks, is not recommended. If I was vegan, I would look at Keto vegan recipes, there is a vegan/vegetarian sub forum on here, and of course the internet must have lots of advice on how to approach it.
We have posted many times, the way to stop hypos and symptoms is to avoid the trigger, in other words food/drink that spikes you (hyper), no trigger, no hyper, no overshoot, no hypo. RH is all about the dietary intake, even so called healthy foods that you have been told are very good for you, are not! The reason is having this condition is not like other endocrine conditions, our problem is too much insulin after carbs/sugar.

I did say that I believe that heliocobacter pylori was the cause of my RH, and I have read quite a few scientific research papers on this, with the outcome being Hypoglycaemia. Wether you have these symptoms because of the bacteria or the anti biotic, I just couldn't say. I have heard about antibiotics being a cause for some illnesses, but I have seen no evidence for it.

I believe you are now on full lockdown, my government is taking too much time to do this(again!) We have not coped well because we were not ready, prepared or wise enough to follow the WHO advice on this pandemic. My area in the north west was the first to go into the highest tier of restrictions this time, but it's not working as yet!

I have not had it yet! Have you?

Keep safe, best wishes.